Viral Update 6

We have now been here for 10 days and Riley has been intubated for 9.  Today has been a very long and emotional day.  Riley looked so good yesterday and did 2 spontaneous breathing trials and did very well.  We were confident that he could pass another one this morning and then extubate in the afternoon around 3:00.  Things didn't go quite as planned.  He didn't do well with the first trial.  He desaturated down to 83% and his respiratory rate was in the 40's.  He had this concerned look on his face like something was wrong.  We stopped the trial and then did some coughing but it didn't seem to help.  He just looked exhausted.  We had to go up to 60% on his oxygen for a little bit and slowly weaned it back down.  Earlier in rounds when we talked about extubating they wanted to stop his feeds so his stomach isn't full in case he vomits and aspirates.  He does have a nissin (where they tie off the upper part of the stomach to prevent reflux) so he does have a smaller chance of this happening but it's still a possibility.  I thought they would just stop it an hour or so before they extubate but they wanted to stop it for 6 hours.  The resident came in and told me this and I told him no that  he can't be off his food for that long.  He had already been off from 6 to 8 am per his normal routine and had only been on for about an hour so this would be an 8 hour break off food. These kids run into problems when they are off their feeds for too long and it's in the SMA protocol, that they are suppose to be followin that they can't not be off feeds for more than 2 hours and if they are they need to be given TPN (nutrition through an IV). He started to argue with me and I lost it and told him I was tired of his b.s. and told him to get out of the room. He started to argue with me again so I yelled again and told him to get out. Mind you the door was wide open so everyone out in the hall heard so the social worker and the Fellow Dr. came running in. At this point I couldn't hold it together any more and just fell apart and started crying.  I chatted with the social worker and the Fellow and  I think we've smoothed things over and we came to a conclusion that the best approach would be to put an NJ tube down so that when extubation is approaching we can stop the feeds in his stomach and put them through the NJ (the feeding tube goes down to the small intestine). This is the frustrating part about all this is that there are too many doctors with all different approaches and I get tired of butting heads with them.  This is why they put protocols into place so there can be a continuity of care. We also decided that he needs to have more frequent shorter breathing trials so we don't wear him out.  Tonight we are going to do his last treatment around 11 and then let him sleep from midnight to 6. I think part of the problem is that he hasn't gotten more than 3 hours of sleep for 10 days. I hope that giving him a good nights rest gives him an extra boost tomorrow. 



Look who awake! They weaned off his sedation drip and Riley is slowly peeking through. I showed him his big get well card all his classmates made for him and he smiled. I told him that Papa had come to visit and he got a big grin from that.  Aunt Heather and Uncle Jordan came up yesterday and brought his an Elmo movie so we popped that in for him and he's trying so hard to keep his eyes open to watch it.  I slept at home last night and Marc stayed up here.  He said that he had a good night off all the sedation.  They did have to go up a little bit on his oxygen he's now on 40% and still on 7 of peep.  I'm glad that he's awake and calm it's just one more positive step in the right direction.  We were inching our way to weaning off the sedation and we were having to give him some Ativan a couple times to keep him calm.  He still looks tired and groggy but he's been through a lot so it will take some time to regain his strength. It's such a relief for him to open his eyes and interact a little.